Primary Cutaneous Gamma Delta T Cell Lymphoma

Hey Laurie - sorry for the delay! We have been going through chemotherapy since January for Gamma Delta T Cell and the symptoms you are detailing are similar to my wife. Her rashes are predominantly on her lower legs but began to rapidly increase towards the end of ‘23 which made us go get them looked at again. The Fevers occurred 3-4 times a week and exhaustion was a tough symptom. We met with Mayo and they walked us through the cancer and it is extremely rare and very frustrating because you can’t google search it and find the results you want. My wife is undergoing CHOP therapy and we have 6 rounds every 21 days. It’s a hardcore treatment but we don’t want to risk this cancer hanging around any longer. We have done 3 rounds so far and the doctors stated she is medically responding to treatment which was the best news we got in awhile. We go next week for our mid way PET SCAN and round 4 of Chemo. Unfortunately the only long term cure for this is a quick follow up with Allogeneic Stem Cell Transplant, which we are looking to do once she is in full remission sometime this summer. That’s a whole other experience we are learning about. Happy to answer any other questions you may have!

I know this is an old post, not really expecting a response. My husband was just diagnosed with Gamma-delta t-cell lymphoma. We are on our way to Siteman in st louis, Mo for the first appointment with his cancer team. Don't know much now just little info from internet. It was comforting to see this post, knowing we r not alone.

Welcome to Connect, @graycoose I promise you’re not alone in this journey with your husband’s newly diagnosed lymphoma. This post with @cmahan10 is still very much active as he relates what’s been happening since his wife was diagnosed with Primary Cutaneous Gamma Delta T Cell Lymphoma.
I’m happy you came to Connect because we’ll be a credible source of information for you and your husband. Searching the internet with Dr Google, while there is some valid information, can lead you down some pretty scary sites with information that may not apply to your husband at all. That just creates stress!

So for now, I wish you both the very best going forward as you discuss his diagnosis with his cancer team. Not sure how long your drive is today but there’s a great discussion with “Your Tips on How to Get Off to the Best Start with a New Specialist” https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

There’ll be lots of information new for you. Take notes and if you need any clarification don’t hesitate to ask his doctor…and then circle back here. I’ll do my best, along with other members, to help you. We’re all about encourament and above all, we’re about hope. Sending a hug along with this post…

Will you let me know what you find out, please?

Yes, thank you!

Good morning, @graygoose. When we last spoke, you and your husband were on your way to St Louis for an appointment with his cancer team. I know you’re both concerned over his newly diagnosed lymphoma. Have you a better understanding of this disease after meeting with his doctor? Is there a treatment plan lined up?

They wanted to do another biopsy, They said they want to be sure before starting treatment. They said its 1 of 2, the gamma-delta or the Subcutaneous panniculitis like T-cell lymphoma don't think they are convinced it's the gamma-delta kind, WHICH IS AWESOME! We should be getting results back on the 30th when he gets a PET scan.
Thanks for checking on us.

Well, I’ll keep my fingers crossed for only good news on the 30th for those test results and the PET scan! I’m happy you had such an encouraging meeting with the new oncology team!
Please let me know what you find out, if you don’t mind.

Hi @graycoose, Just checking in with you to see if you had some positive news from your husband’s cancer team. Did he get the results of his PET scan and biopsy?

Yes, unfortunately it is primary cutaneous gamma-delta t-cell lymphoma. He started his first round of ICE last week and has another round on the 20th.

Well, shucks, that’s not the diagnosis you were hoping for. The good news is he had a firm diagnosis so that treatment could be started right away.
Usually the week following chemo is when the side effects of the treatment begins to be felt, such as fatigue, possible loss of appetite and just feeling pretty loagy.
That usually lasts for about a week or so as the blood numbers drop being impacted from the chemo. Within a few days he’ll start feeling a little more chipper as his blood numbers (red blood cells, white blood cells and platelets) start rising again. Often, just in time for round two of the chemo.
How’s your husband feeling? Was he admitted to the hospital for the chemo infusions or is this outpatient?